A New Perspective on Migraine Specialists

Visits to my local headache clinic are usually stressful. First, there’s the travel involved with its loud, stinky, and visually overwhelming triggers. Despite being loaded with acute meds, protein-rich snacks, water, and my Cefaly, this is usually enough to have me feeling woozy and ripe for an attack. But it’s only the beginning.

When I arrive at the hospital, there’s some to and fro for prescriptions, check-in, delivery of my Botox to the nurse, paperwork, and payment, including at least four elevator rides. Then I wait, usually for about an hour past my actual appointment time. Despite the hospital’s excellently advertised fragrance free policy, often this waiting is done in a cloud of perfume.

I meditate, I read, I breath deeply, and a review my questions and goals for the appointment. It doesn’t seem to matter that I’ve been attending this clinic for years, and that I know the routine, or that I’ve made vast improvements in that time. Every visit is emotional. Good thing the receptionist always has tissue on her desk.

Finally, my migraine specialist greets me warmly in the waiting room, and we walk briskly to the treatment room where we quickly discuss my treatment plan. I try to get my questions in while my doctor gives me 23 injections of Botox to the noggin and neck (it’s a little tough to concentrate, but there’s so little time) and then I’m done. Off I go, sometimes with unanswered questions and forgotten requests for prescription refills.

Even though I think very highly of my doctor, visiting the clinic is so stressful as a whole that I have not always viewed it in the kindest light. That changed during my attendance at the American Headache Society’s recent 58th Annual Scientific Conference in San Diego.

When Dr. Dawn Buse pointed out that physician burnout is incredibly high among headache specialists,¹ and spoke about ways neurologists could care better for themselves, I started to think about what the work entails, and I started to listen more carefully to the stories around me.

Most headache specialists are swamped. There is just one specialist per 80,000 migraine/headache patients in the U.S. On the surface, this is because of a lack of funding. Dig a little deeper, and one finds that migraine is suffering from a real legitimation problem; the medical community at large does not take it nearly as seriously as it should given its prevalence and the level of disability it causes for a significant slice of the people pie (statistics vary, but at least 15% of the adult U.S. population deals with at least one migraine attack per month).

The reasons for this are complex. Partly, not enough doctors venture into headache medicine because these conditions are notoriously difficult to treat. It’s also partly because migraine has historically been seen as a “woman’s problem;” a less-than-real, unworthy field for serious study. (As I’ve mentioned before, Joanna Kempner does an amazing job of laying out this history in her book Not Tonight: Migraine and the Politics of Gender and Health.)

Many of the doctors I met had joined the field of headache medicine and because they, or someone close to them has dealt with migraine, and they truly want to find viable treatment options for people who are disabled by the disease. I found a group of people working hard to debunk myths and challenge stigma around migraine, and who were working hard period. They work long hours, sometimes without breaks, and are mostly unable to provide easy answers or solutions for their patients. Progress is often slow, and patients are often disgruntled. It’s tireless work that requires incredible stamina and commitment.

I realized that the stressful nature of my visits to the headache clinic has nothing to do with the people who run it, and everything to do with the fact that for reasons beyond their immediate control, they have their work cut out for them. I am not saying that all headache specialists are saints, but I willing to bet a large number of them come close.

So the next time I feel like lashing out at my specialist because my needs are not perfectly met by the clinic, I will try to remember to accompany my constructive criticism with a heartfelt thank you.

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Comments

I agree with all of this, thanks for writing this article! My daughter’s former headache specialist suffers from migraine herself, so I know she gets it & her dedication is inspiring. I was recently diagnosed with Sjogren’s syndrome and the reaction I get from people when I tell them this is typically, “I’m sorry” or some version of sympathy or empathy (after they ask “what is that?”). Yet, when I share with people that I suffer from migraine, I usually just get advice like “Drink more water” or judgements like “You must be stressed”. Yet, migraine has taken far more from me and my daughters in terms of quality of life and missed opportunities at work, school, home, and socially. So, yes, migraine and its sufferers and health providers definitely suffer from a legitimacy problem. Migraine and headache specialists deserve our respect and thanks for their dedication!

Great article, Anna. I’m so glad you were able to attend the conference. Your description of the people you met fits exactly with my experience, too. “These people care” is a thought that goes through my mind frequently at conferences.